It’s November. I realize I’ve missed the boat on the back-to-school post, but for the first few weeks of school I wasn’t sure if it would be a school-is-great/inclusion post or a diary from the nervous hospital where nice people with pharmaceuticals come and check on me — sort of post.
We decided a bit late in the summer that we were not going back to Windy City, Afghanistan for several more months. We wanted the kids to have the assurance of one place to start and finish the school year so we enrolled Violet and Dash in their classes in our small, hometown Christian school.
This school is not just any school. My parents helped to start it. I went to school there and so did my sisters. My mom has been a teacher there for 30 years. It is a big part of my childhood, my faith and our family. Violet and Dash have gone there when we are in the States and their classmates keep in close contact with us when we are apart. When we were in Afghanistan this past year, Dash’s classmates went out on the playground and yelled and yelled, in hopes that he could hear them.
When Jack Jack was diagnosed with Down syndrome, the school was something I really grieved over, thinking that it was closed to him; that it would not be part of his childhood. Too academic, too fast paced. No way he could go there.
And then, suddenly, we were faced with needing to decide where to have Jack go to school and I was not thrilled with our public school options, but so emotionally drained and exhausted from all the losses of the past year that home schooling wasn’t much of an option either. My mom encouraged us to look at putting Jack Jack in the Christian school, so with some trepidation, we set up a meeting. And the meeting was brief but positive. Yes, we’d loveJack Jack to come. We think it would be great for him and great for the school. But there are no services. No aid, no help adjusting the curriculum. Okay, I’ve been homeschooling, I think I can figure this out and we really do want him part of this community.
First day of fourth grade, second grade and kindergarten
I rounded up several volunteers, a different person each day, to help him in the classroom. Parent involvement is a huge value, so there were several moms wanting to help out in the classroom and willing to work with Jack Jack and me.
A friend of our family, who had adopted two kids with special needs later in life and who had recently lost their youngest son, was longing to be back in the world of special needs parenting and so she took on a more official “aid” role for Jack Jack in the classroom.
Serious work going on. Ds moms will cheer for the pencil grasp!
And then, ten days into the school year, just as we are figuring out things like a potty schedule, how to help him with transitions (he was flat out refusing to come in when the bell rang) and what his learning curve was, the kindergarten teacher resigned. And good friends of ours lost their little girl in a complicated heart surgery. I was devastated on both accounts and my knee jerk reaction was to yank Jack Jack out of the classroom and keep him close, keep all these bad things away from him.
Don’t let the smile fool you. It took some stern teacher voices to get him to line up.
But…all the reasons to have Jack Jack in this Christian school remained. The community we’d built, going to school where Violet and Dash and Grandma are right with him, the prayer and values of our faith, and the fact that his resource teacher was seeing more progress in 30 minutes a day then I’d managed in a year of home schooling… We stayed, but it was a day by day decision for a while.
The classroom was a bit chaotic, but the parents all rallied behind the school, we took turns subbing and volunteering and keeping things as normal as possible for the kids and in three weeks a new teacher was hired. And in those three weeks, something happened. Jack Jack went from being the only kid in the school with special needs, to being a kid in school.
learning some songs with his cousin, who offered to stand with him so he wouldn’t get lost in the crowd.
He has friends, kids who consider Jack Jack one of their friends. He does circle time and calendar, chapel and the Pledge of Allegiance. He plays with Dash and those adorable second graders at lunch and gives Grandma a hug and her junior-high class a high-five when he goes by her classroom.
And you know what we don’t have? IEPs. Long, drawn out meetings where battle lines are drawn over services. No pointless testing — I work with his resource teacher and a private reading specialist and prepare his work for the week. I went to parent teacher conferences with a list of all the things he’s learned in last quarter and some ideas of where to go in the next. The principle was pleased, his teacher was pleased. We discussed the upcoming pancake breakfast fundraiser, prayed for each other and meeting over. We would not trade that for all the special ed degrees in the world.
So far I’m zero out of a hundred on all the things I thought were out of reach because of Down syndrome.